Any time a medical condition includes the word “failure” it’s a safe bet it’s something serious. So when people find out they have heart failure their reaction is often shock, followed by fear.
Heart failure occurs when the heart becomes weak and is unable to pump enough blood to the rest of the body (1). The weakness may be the result of a previous heart related disease (e.g. a heart attack) or it could be caused by an infection, high blood pressure, toxins such as alcohol and drugs or another medical condition (1). Complications from a weak heart often result in people retaining fluid, which in turn can cause swelling in various parts of the body, as well as coughing, feeling tired and short of breath. Sometimes enough fluid collects in the lungs to cause a life-threatening condition called acute pulmonary edema (2).
So yes, it’s serious. But although there’s no cure, it isn’t hopeless. People can function with the condition; currently an estimated 600,000 Canadians are living with heart failure (2). They can even enjoy a good quality of life by closely managing their medication and caring for themselves with a healthy diet and regular exercise (1).
However, despite the fact that guidelines for heart failure patients includes providing information and self-care instructions (3), many people with heart failure don’t make lifestyle changes that promote heart health (4). Obviously there is a gap between the information patients are given and what they do (5,6). A recent systematic review analyzed the results of 37 studies in an effort to uncover ways of encouraging people to make important lifestyle changes and stick with them for the long term (7).
The studies involved more than 1,300 heart failure patients as well as 75 caregivers to find out their general understanding of heart failure, their knowledge about self-care (including managing medication, diet, physical activity and fluids), as well as their experiences and challenges with self-care.
What the research tells us
The evidence confirms experts’ suspicions: when it comes to heart failure it’s not enough to simply give people information. They may read and have a basic understanding of the steps that need to be taken (e.g. what foods to avoid, which exercises to do, how much liquid to drink) but some people have difficulty knowing how to incorporate the recommendations into their own lives.
A personalized, targeted approach may be a solution. For example, healthcare professionals can work with patients to develop a customized self-care plan that acknowledges how their symptoms affect them and suits their needs, abilities and preferences (8). Related recommendations include seeking patients’ feedback, understanding their personal experiences, offering coaching, and promoting a sense of control. The use of ‘decision aids’ (tools that guide people through the process of making difficult decisions) may also be useful in putting together an effective self-care program (8).
The goal is to have patients “take to heart” the messages they receive about their diagnosis and to give them the support they need to take care and take responsibility for their own long-term health.